Federal:
Budget Reconciliation Update
On May 22, the House of Representatives approved a budget reconciliation bill designed to advance multiple policy priorities: extending the 2017 tax cuts, increasing border security, and bolstering defense. To pay for those policies, the House bill makes deep cuts in federal spending on health programs. The reconciliation bill, as passed by the House, includes the most significant cuts to the Medicaid program in its 60-year history and dramatic, destabilizing changes to Marketplace coverage. If signed into law, the legislation would reduce the number of people enrolled in coverage via Medicaid, Medicaid expansion, and Marketplace coverage, resulting in combined insurance losses of more than 13.7 million people over the next 10 years.
Medicaid
The bill would require all states, by December 31, 2026, to implement work reporting requirements for their Medicaid expansion population (non-disabled adults ages 19-64). The legislation would provide a variety of exceptions to the work reporting requirements (including for people with “serious and complex medical conditions”) – but Medicaid applicants and enrollees would still need to navigate bureaucratic processes and red tape to prove their eligibility for the exception.
The bill would apply mandatory cost-sharing requirements to the Medicaid expansion population. Beginning in October 2028, states would be required to impose cost-sharing of up to $35 per service, capped at 5% of the individual’s income. For prescription drugs, the cost sharing could be no higher than "nominal" for people with incomes under 150% of the federal poverty level, or up to 20% of drug cost for people above 150% of FPL (subject to the overall 5% cap). Providers could at their option reduce or waive cost-sharing on a case-by-case basis.
The bill would require more frequent eligibility checks on Medicaid enrollees, requiring renewals every six months rather than annually, and would delay implementation of certain rules designed to streamline and facilitate enrollment.
The legislation also significantly restricts how states raise revenues to support their share of the Medicaid program by placing limits on provider taxes making it even harder for states to try and make up the difference. (In one small piece of good news, the bill did include a provision which would help to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP for the purpose of treating children on Medicaid who need to seek care out-of-state. This is identical to the Accelerating Kids Access to Care Act, which NBDF supports, and would go into effect four years after the bill passes.)
Affordable Care Act (ACA) Marketplaces
The bill would shorten open enrollment periods for Marketplace insurance and would restrict the availability of certain types of special enrollment periods (SEPs) such as SEPs for people with incomes below 150% of the federal poverty level.
Fewer people would be eligible for advance premium tax credits (APTCs) that lower the cost of premiums for Marketplace insurance. APTC-eligibility would be eliminated for:
People without verified eligibility (i.e. those who previously would have been passively re-enrolled in insurance),
People earning above 400% of the federal poverty limit, and
Many groups of lawfully present immigrants, including DACA recipients and immigrants granted asylum or temporary protected status.
Notably, the bill does NOT extend the enhanced APTCs for ACA insurance, which have been in place since 2022 and are set to expire at the end of 2025. If the enhanced APTCs are not extended, premiums for 2026 ACA health insurance are expected to increase by over 75% on average. Lower-income and older enrollees, as well as people living in non-Medicaid-expansion states, would face the highest premium increases, and nationwide up to 5 million people are projected to lose coverage.
After the House votes on the full reconciliation package, it will go to the Senate – the fight is far from over as it is unlikely the Senate will take up the House bill without changes.
NBDF led a sign-on letter for the bleeding disorders community opposing these cuts. The letter was sent to the entire House of Representatives ahead of the vote on May 22. NBDF also joined a number of letters and statements in opposition to the bill as part of the Partnership to Protect Coverage.
President Releases “Skinny” Budget
On May 2, President Trump sent a letter to Senate Appropriations Chair Susan Collins with his priorities for Fiscal Year (FY) 2026 – a so-called “skinny budget,” because it only has high level requested funding levels and it was not followed by the more detailed documents that show funding and programmatic updates for each agency and program. The document is not specific on the federal bleeding disorders programs, but we expect more information to be released soon. NBDF is also working with partner organizations to meet with House and Senate appropriators to explain the importance of the federal bleeding disorders programs – ultimately Congress holds the power over federal programs and funding for FY26.
HHS Secretary testimony
Robert F. Kennedy Jr. appeared before House and Senate panels on May 14 for the first time since his confirmation as HHS Secretary. The hearings covered a wide range of topics but included questions about the widespread layoffs and reorganization of HHS and its component agencies including CDC and HRSA. Secretary Kennedy deflected questions about the reorganization, saying that pending lawsuits prohibited him from answering.
Departments of Health and Human Services, Labor and Treasure Issue Request for Information on Prescription Drug Price Transparency
On May 22, the Departments of Health and Human Services, Labor and Treasury issued a Request for Information (RFI) on prescription drug price transparency. The guidance follows a previously issued Executive Order on price transparency issued in February and focuses on hospitals and health plans.
State:
Arizona: H.B. 2380, which creates a Rare Disease Advisory Council, was signed into law by Gov. Hobbs May 12.
Indiana: HB 1604, Indiana’s pharmacy benefit manager (PBM) reform legislation, which contains a ban on copay accumulators and maximizers, was signed into law by Gov. Braun May 6.
Maryland: SB 773, the State’s copay accumulator and maximizer bill, was signed into law by Gov. Moore May 20.
Massachusetts: H 1101 and S 698, the Commonwealth’s copay accumulator adjuster legislation, were introduced and are set to be heard in the Joint Committee on Financial Services on April 30. The New England Hemophilia Association organized representatives from the bleeding disorders and chronic disease community to testify in person.
Montana: On May 13, Gov. Gianforte signed H.B. 943, creating a Rare Disease Advisory Council in the state.
Nevada: The Senate Committee on Commerce and Labor held a hearing May 14 on S.B. 316, a PBM reform bill. The bill was amended and passed the committee on May 29. The amended bill dropped the language banning copay accumulator adjusters.
North Dakota: On April 29, Gov. Armstrong signed H.B. 1216 into law making North Dakota the 22nd state to ban copay accumulator adjusters. The law is the first in the country to ban copay maximizers as well.
Rhode Island: SB 477, the State’s copay accumulator legislation, will be heard in the Senate Committee on Health and Human Services on May 1.
South Carolina: H 3934, the State’s copay accumulator adjuster legislation, is due for a hearing in early May in the House Labor, Commerce, and Industry Committee.
Wisconsin: The Senate Health Committee held a hearing on SB 203, a PBM reform bill with copay accumulator adjuster language, May 28. NBDF and other members of the Wisconsin All Copays Count Coalition testified in support of the bill.
